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Monday, September 26, 2011

Our Angel, from Robin's Eyes (and Heart!)

I first met Destiny at our mutual friends Laura Hershey and Robin Stephens’ home in the summer of 2009. We were celebrating their new daughter’s arrival. As I walked in the room, I immediately saw this very little, charming girl sitting on her momma’s lap. She reminded me of the paintings of angels that my mother hung over my bed when I was a little child. We didn’t get much time to talk to each other, but there was an instant connection. A few months later, my little boy unexpectedly passed away. I felt that my life had lost all meaning.

Through a series of events, Destiny’s mother, Tammy and I had the opportunity to became close friends. Tammy asked if I could care for Destiny a few days a week while she was working. I was so happy to have this little girl with her sweet face framed in soft curls in my life. Destiny, our angel, brightened up our home with her laughter and chatter. I would take her to visit my mother who had dementia. She would play with my mother’s Precious Moments figurines – making them talk to each other – and my mom would smile and laugh like I hadn’t seen her do in a very long time. That winter and spring were filled with Destiny’s happiness – which was so contagious that it made us happy too. In the summer of 2010, Destiny and her brother Benny were able to take advantage of the camp scholarship fund created in our son Brady’s name. Destiny said to me “it was so nice of Brady to pay for camp for me and he didn’t even know me!” When my mother passed, she assured me that “Meme” was in heaven with Brady waiting for me. How can you not believe an angel?

It was about that time that Destiny started to have seizures. At first, we would see her stare for a few seconds. She would be playing with her doll house chattering away, and then we would hear a few moments of silence. One evening, we got a phone call that Destiny was in the emergency room as she had a seizure. With our friends Julie and Lowell, we took turns visiting her room and watching Benny. The seizures became more frequent, and we were called to the emergency room more and more often. I will never forget Destiny’s first seizure at our home. She went to go to the bathroom while we were watching a movie together. She didn’t return for a few moments so I went to check on her. She was in the hallway, lying on the floor. I picked her up and she started crying – only it didn’t sound like a child crying – it was like a cat crying. She was unresponsive and the crying continued. I rocked her in my rocking chair as I called Tammy. My son drove us to the emergency room. By the time we got to the emergency room, she was sleeping. When she saw her momma, she climbed into her lap and cuddled in.

Because of the frequency and intensity of the seizures have increased, Tammy is no longer able to work. I no longer watch Destiny during the day. Destiny has been diagnosed with Dravets Syndrome. I visit her and some days I am greeted with a bounce into my arms and a big hug. On other days, I am dismayed by her demeanor. She is very tired and can only give me a bit of a smile. Tammy’s “job” now is to make sure that Destiny stays on her special diet – a diet that has reduced her seizures – and to provide 24/7 line-of-sight supervision. There is a medication that has been approved in Europe for this extremely rare condition. Studies have shown that this medication can help Destiny. We are waiting for approval from Colorado Medicaid for payment of this medication. It will take several months. In the meantime, we are asking folks to help Destiny’s family pay for this medication. Destiny has helped me to heal from the greatest loss a parent can suffer. Now I want to help provide her with the medication that can help to heal her. It is the least that I can do for this little angel. Note: Robin is one of our closest family friends. Her entire family has included us into their family seamlessly. It was only today I discovered we don't seem to have any pictures of these two together. It's really hard to believe being the amount of time they have spent together!...We'll change this soon! Until then, some of Robin's favorite pictures are included above.